Orkambi company charge ‘grossly excessive’

The charge being forwarded by the company producing Orkambi is “grossly excessive’’, Taoiseach Enda Kenny has said.

The US firm Vertex Pharmaceuticals produces the drug for cystic fibrosis sufferers, who are waiting to hear if the Government will pay for it.

Mr Kenny said the company was using cystic fibrosis patients "to say we have a drug that enhances your quality of life''. He added there was a percentage of people for whom it did not work.

He said there was a big difference between the €160,000 being sought per patient annually by Vertex, and the €30,000 value put on the drug by the National Pharmaceutical Agency.

Amid exchanges with the Opposition, Mr Kenny said he did not hear the company say it was prepared to come way down on the price. “If they are prepared to come way down from €160,000 per patient, well then let us see what they are talking about.’’

He urged the company to return to intensive discussions and reduce the price for those who would benefit from the drug.

The Taoiseach was replying to Fianna Fáil leader Micheál Martin and Sinn Féin leader Gerry Adams.

Negotiations

Mr Martin

said 32 new cancer drugs had been approved since 2012, but only two for cystic fibrosis sufferers. It was easy to attack a company. “I am not clear, being frank with you, there have been intensive negotiations on this.’’

He insisted the Orkambi drug was effective. “There have been too many attempts to belittle the effectiveness and impact of the drug by the HSE and others, in terms of not accepting the 40 per cent reduction in hospitalisation and the significant benefits that flow.’’

Mr Kenny said that was not true.

Mr Adams said the island of Ireland had the highest number of people in the world suffering from cystic fibrosis, and the largest proportion of families with more than one child who suffered from the condition.

He said there had been two "heartbreaking and emotional'' presentations to Oireachtas members.

“We have heard from parents who have buried children and those who manage gruelling daily medical regimes and endure recurrent hospitalisation,’’ said Mr Adams .